Touching base 2 years after joining this community.

[Surami2020]

Hi everyone,

I thought I would update you on how I am going after I was initially diagnosed with PMR in early 2020 which was changed to Psoriatic Arthritis 6 months later. I found a successful treatment in Leflunomide in November 2020 along with the prednisone I could not taper off. I managed to get to 4mg but couldn't get any lower in early 2021 and the rheumatologist was happy with that.

In December 2021 it appeared that my arthritis was well and truly under control and for the first time in 2 years my CRP and ESR were well down into normal range and I had lost 7kg in weight so I was told to taper off the prednisone if possible and to go back to 4mg if necessary.

Soooooo...... In January of this year I totally tapered off the prednisone and realised how much it was affecting me in the late afternoons as I could now walk reasonably well- I took the prednisone in the evening and for 2 hours either side of when my prednisone was due I was literally taking steps 10cm long due to the pain. I also look like myself again and although it is vain I am definitely happier now that I do not have the moon face. Above is a picture with me on prednisone and last month after prednisone.

Sadly my symptoms are slowly increasing again to the point that I do not just have stiffness from my neck to my knees but the burning muscles are back. I have a skype meeting in a few weeks time to find out where we go from here. I do not want to go back on prednisone and can still cope (although whingy) with the pain levels.

I hope everyone one out there has an understanding and caring rheumatologist who looks at the whole picture. I am so lucky mine has not badgered me about tapering too soon, my weight or exercising etc. I did what I could each day and take each day as it comes.

Sending you all virtual hugs and best wishes on your journey navigating your condition.

[PMRpro Ambassador]

Nice to hear from you.

And I know you don't want to hear this - but January to now is a common timing for symptoms to reappear when the underlying autoimmune disorder is chugging along at a really low level and you think it is OK to stop the pred. Had you reduced much more slowly, you might have discovered that 1mg was enough to manage the tiny amount of inflammation each day - but the dripping tap of inflammation was still running and has eventually filled the bucket and overflowed.

The sooner you bite the bullet, take a short course of pred to mop it up, say 5mg for a couple of weeks, and drop back to 2mg and taper to 1mg again - the less likely it is you will get back to your original state where you need a much higher dose to get things under control. You really are not alone - I have come across this so often over the years.

[Surami2020 in reply to PMRpro]

Thanks PMRpro for your advice. I will do a short course and hope it settles everything down😊

[PMRpro Ambassador in reply to Surami2020]

It probably won't be a cure - but it could get you to 1mg ongoing which would be great wouldn't it?

[Surami2020 in reply to PMRpro]

It would indeed.

[Jackoh]

Some really good advice from PMRpro. Loved the smiley face! 💐

[Bobwif]

Hi. My experience similar. After three plus years on Pred ( 20mg slowly down to 5) I was encouraged to try and reduce to zero by my go especially as I had a heart attack last year when on 5 mg. I reduced 1 mg every 6 weeks with no significant effect. Thought yay! Finally stopped completely in January and was fine for about two weeks. Then the aches crept back. I tried going back to 2mg but no help. Went to 3 mg and better but not completely. Also had Covid in January. As a 74 year old (male in UK) it’s difficult to tell if the aches are due to PMR , age, or Covid.

[DorsetLady PMRGCAuk volunteer in reply to Bobwif]

As you say, probably a combination of all three! But if there was a change between 2 & 3mg -there’s maybe part of your answer..those doses wouldn’t be high mask other other pains.

Are you still on any Pred or not?

[Bobwif in reply to DorsetLady]

Currently on 3mg.

[DorsetLady PMRGCAuk volunteer in reply to Bobwif]

So what are the issues you have on that dose?

[Bobwif in reply to DorsetLady]

Aches mainly In shoulders. Did have bad pain in ( bizarrely) one leg in the hamstring area. That’s gone. I also do Pilates so sometimes have aches after that so difficult to know if I should go higher short term or stick with it.

[PMRpro Ambassador in reply to Bobwif]

I would try 5 or 6mg for a week and then try 3mg.

[Bobwif in reply to PMRpro]

👍

[DorsetLady PMRGCAuk volunteer in reply to Bobwif]

Agree with PMRpro - maybe a week at higher dose….and yes agree about Pilates…sometimes it is difficult to know what’s what.

[Bobwif in reply to DorsetLady]

👍

[MiloCollie]

You look great! Well done on your achievements. Maybe we are now destined to live with a certain level of pain and make the most of it?! Anyway if you can smile as lovely as that then all is not lost xxx

[Lonsdalelass in reply to MiloCollie]

Ditto to MiloCollie!